dementia (how design is changing)

8/9/2019 Dementia (How Design is Changing)

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DementiaHow design is changing


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Should older people who suffer from

dementia be designed for and not with?

Is it possible toco-design with

everybody?

Words & IllustrationsCulainn B Shanahan


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Co-design has developed from participatory design in ordero cover a broad range of design methodologies. These can be

broken down in to four cultures of co-design. The first andmost basic is Meta design (Stappers and co, 2012). This puts thedesigner in charge up until a given point where they then helphe end user to find the final customizable choice. This can beeen in the case of Nike ID, which allow simple changes to the

final cosmetic appearance of a product. The second method lies inhe most modern definition of co-design. This uses the designer

as a facilitator of a design team made up of end users and othertakeholders. The third method puts the designer in the role of a

eacher, passing design skills along to the end user so they candesign themselves, this is called assistive design (Stappers and co,2012). The final culture is the next step of design thinking, termedopen design. This method of thinking totally breaks down the roleof designer and end user. Shared and understood information ispassed freely, allowing innovation to thrive. The future of co-design lies in a shared understanding of goals for change andcreativity. Through this, problems can be identified at their rootcause, meaning solutions can be generated to benefit the lives ofall parties involved.

Elizabeth Sanders, creator of maker tools (tools for co-designactivities) and renowned co-design facilitators said in a interviewwith Frame magazine, The more we figure out what peoplereally want, the less we have to produce. Co-creation is a way ofensuring that we only make what people need (Sanders, 2009,

p109). With this in mind, it can be discerned that co-design isnot just a new way of designing more marketable products andservices, but a new mentality to design, why create somethingno-one wants or needs. Taking the end user and putting them atthe forefront of the design process not only makes the designers

job simpler, but also saves money on something, which therewas no need for in the first place. The co-design process usuallystarts with service design research such as ethnography. Bystarting with a basic knowledge of an end user, the designer isable to work with them to produce viable solutions to impacttheir lives by finding a gap, not creating a need (Sanders, 2009.p108). Using co-design tools with guidance, end users are able toco-create, any act of collective creativity, I.E creativity that isshared by two or more people (Sanders, and Stappers, 2008, p6).This allows a greater depth of design thinking due to all partiesinvolved understanding what the final goal and outcome of aproduct, system or service should be. However is this possible forsomeone who may not know what he or she wants or needs?


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WHAT IS DEMENTIA

Dementia is a term used to describe broad symptoms of memory

oss, mood changes and problems with communication and

reasoning. There is no known cure for dementia and once

developed, it is known to mature and the symptoms to intensify(Alzheimers society, 2013). Jacques and Jackson noted At the

final stages the patient may be assumed to have no real subjective

awareness, no sense of self at all, and to be in this sense mentally

dead. (Adams, EAN, 2003). Studies in understanding dementia has

become a hot topic for researchers, due to the expected increase

of patients to reach 115 million worldwide by 2050 (Brookmeyer

et al, 2009). It is understood at the moment, many people are not

diagnosed in the early stages of dementia when it is just mild

cognitive impairment. This is worrying because it means many

people are unable to logically pre plan their future of care and

support. (Dungen, et al, 2007). By planning with the patient in the

early stages of their condition, the later carers will know patientpreferences, and make agreed planned decisions on their care.

Due to Dementia being such a broad term, not every type can becategorised. This said, the 5 most common types are Alzheimersdisease, vascular associated dementia (VaD), Lewy bodies (DLB),Frontal-temporal dementia (FTD) and Korsakoffs syndrome. Themost common of these is Alzheimers, which affects around 500000 people in the UK (Think Public, 2013). Alzheimers disease iscaused when protein plaques and tangles develop in the brain,leading to the death of brain cells (Alzheimers society, 2013).The condition intensifies over time, leading to loss of memoryand mood swings. Although the exact reason of how Alzheimersdevelops is unknown it is widely regarded that a mixture of

age, genetic inheritance and environmental factors are all keyfactors to its development. This shows a stark contrast to how

VaD is known to develop. VaD develops by arterial brain lesions(Korczyn, et al. 2012). Decreases in oxygen getting to the brainmeans that brain cells are destroyed leading to mild cognitiveimpairments which then increases in to full blown dementia(Korczyn, et al. 2012). Lewy bodies (DLB) is caused when proteinson the ends of nerve cells attack the brain causing symptomssimilar to Parkinsons and Alzheimers to occur (Alzheimerssociety, 2013). FTD is caused when some damage has occurredin the frontal temporal lobe, this affects mood and emotion.

Although there are some similarities to Alzheimers, FTD is widely

regarded as a form of dementia in its own right (Alzheimerssociety, 2013). The fifth most common type of dementia isKorsakoffs. This occurs due to a lack of vitamin B1, usuallyfrom excessive alcohol consumption. Unlike the other types ofdementia, this can be stopped from intensifying if addressed,by receiving high amounts of vitamins and stopping alcoholconsumption. By doing this the effects of dementia can be keptcontrolled (Alzheimers society, 2013).

At the finalstages the patient

may be assumed

to have no sense

of self at all, andin this regard

mentally dead

Co-design is the act of designing with a consumer. It uses design

tools such as idea generations, scenarios, storyboards and servicestaging (Stickdorn and Schneider, 2011) in order to help the enduser become more actively involved with the design process.By doing this the designer as a facilitator is able to compile anin-depth knowledge of the user, their needs and wants. Futuredesigns can then be created together in order to overcome theseareas. Co-design methods go through constant evaluation inorder to cater for different types of people who may be involved.Renownd co-design researcher Elizabeth Sanders believeshealthcare is becoming a very competitive world, and the newemphasis is on well-being and prevention, not just fix it whenits broken (Sanders, 2009, p111). By understanding peopleslimitations, co-design methods can be adapted to cater for

anybodies needs. Professor Nigel Cross stated in regards toparticipatory design, professional designers in every field havefailed in their assumed responsibility to predict and design-outthe adverse effects of their projects (Sanders and Stappers, 2008,p7). If this is the case then there is a need to look further in to theneeds of the consumer with new approaches such as co-design.Through constant development of co-design tools, in theoryeventually it should be possible to design with anybody.


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SHORT HISTORY OF MODERN DESIGN

It can be said that the modern design movement first came to

ight in the 19th century with Carl Marks theory of Alienation

(Wolff, 2008). Through constant design and manufacture of

unneeded capitalist product ranges, the consumer has been forced

to create a need in their life instead of their known problems

being catered for. This has left the consumer to search for

solutions to their problems. Co-design builds on the participatory

design mindset that users are the experts of their own domain

(Holland, 2011). Participatory design was conceived in the 1980s

n Sweden. Project Utopia first used the idea to give the end usera voice, in the design of a computer support system (Matias,

2011). This new method of design not only supported the designer

to think deeper about the impact of a product, but also helped

them to develop low cost prototypes, causing effective ideas to

be brought to life, faster. Donald Schn who in 1983 published

the book, The reflective practitioner, supported participatory

design. The book summed up this movement of design as a shift

away from outcome to process (Matias, J. 2011). The pioneers of

this design thinking through the 90s and 00s were in the field

of interaction design. It has only been recently that the industry

of co-design has been able to move in to other areas such as

architecture, so says Elizabeth Sanders (Sanders, E 2009). Stillemerging as a practise, co-design is being led by a very select

group of companies in England such as Thinkpublic, Futuregov

and Fitch. These companies use service design tools to understand

their consumer, their needs and areas in their lives, which need

attention and then develop with their end users to design a

solution for this.

In order for a co-design process to take place, it is the duty of thedesigner as a facilitator to understand as much as they can beforea co-design event. This is in order to help focus the directionof discussions and aid participants in the design process. Eachproject needs to be suitably adapted to the people involved sothey understand every phase and are able to cooperate efficiently.There are four key elements for a co-design event to be a success.These are firstly to create a shared understanding so everybody

knows what the aims of collaboration are. The second is tosupport a sense of immersion. This means that everybody must betreated equally, all being encouraged and given the opportunity tosay what they think. The third is to create emotionally stimulating

visual materials, which engage the user, encouraging them tobe creative and think about their own needs. The final outcomeis to create a platform for future collaboration of ideas. (Hagen,Rowland, 2011). By following these steps, not only can blue skyideas be generated, but implementation of these ideas can begrounded.

The negative belief many people have of co-design has meant

hat it has taken a long time for it to come to where it is today.Mark Hicks noted that many companies may be worried aboutopening up, and many hesitate to share ideas and strategies withpeople they dont employ (Hicks, 2010). This is very commonespecially when due to the saturation of many markets; acompany may only have a few innovative unique ideas.Co-design amplifies the fear that they will be copied after oreven before they are able to develop these ideas. Others believeon a basic level that co-design is just not the answer. This viewhas been taken by the well-known designer Mirko Van denWinkel, who said, Personally I believe that co-designing usingyour clients as co-designers doesnt ever lead to real innovationdesign council, 2012). Although many still hold the belief that

here are a select few who are creative, they are fast becominga minority. People are starting to understand that anybody whowants to be creative, can be. We all have the power to changea service or product through our own means such as hackingwith Sugru or concept generations with open IDEO. Co-designs emerging as a major design practise, It facilitates futurecollaboration, as it brings groups together (Stickdorn andSchneider, 2011). By showing the end user control over a serviceor products development, their knowledge and input can onlyncrease the more they join in. With the freedom of informationand education only increasing, The Network Generation (Sanders,and Stappers, 2008, p9) will take co-design to new levels of

development.

Give the end

user a voice


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Presently it can be concluded that in order for those sufferingwith dementia to take part in co-design, the designer needs to domuch research beforehand. This in turn can make it an unviableolution, due to large research costs that must be paid to the

designers involved. The key is to understand the ability of co-design participants, know how much they understand and be ableo get the most out of them. If co-design techniques are able to

grow through open sources, a shared knowledge will be able to

educe the gap between designer and end user. This will reducehe need for large research costs and could potentially allowhe end user to develop products, services and systems, utilizingesources they already have. An example of how co-design is

already taking place can be seen with Open IDEO, who using thepublics knowledge of services, helps to develop logical outcomeswith them. Through this it is possible to see a future where designs not just left to a select few, but open to all that have a positivenput.


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ADAMS, T. and MANTHORPE, J. (2003). Dementia care. London, Arnold. http://site.ebrary.com/id/10397070 [accessed 26/01/2013]

Alzheimers society (2013) Information. Available at http://www.alzheimers.org.uk/ite/scripts/documents.php?categoryID=200362 [ac-cessed 12 Feb 2013]

Brookmeyer R., Johnson E., Graham K., Arrighi H (2007) Forecasting the global burden of Alzheimers disease. Department of Biosta-istics, Johns Hopkins Bloomberg School of Public Health, Johns Hopkins University, Baltimore, MD, USA [online] Available at http://

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Design council (2008) Design Council - Co-design. [Online] Available at: http://www.designcouncil.org.uk/resources-and-events/de-igners/design-glossary/co-design/ [Accessed: 12 Feb 2013].

Dungen P., Marwijk H., Horst H., Charante E., Vroomen J., Ven P., Hout H (2011) The accuracy of family physicians dementia diagno-es at different stages of dementia: a systematic review: International journal of Geriatric Psychiatry (27), pp 350

Hagen P and Rowlan N. (2011) Enabling Codesign | Johnny Holland. [online] Available at: http://johnnyholland.org/2011/11/enabling-codesign/ [Accessed: 12 Feb 2013].

Hicks M. (2010) Collaborate to innovate? Getting fresh small company thinking into big company innovation, Interactions magazine.May/June 2010

Korczyn A., Vakhapova V., Grinberg L. (2012) Vascular dementia. Journal of the Neurological sciences [online] Available at http://ac.els-cdn.com.v-ezproxy.brunel.ac.uk:2048/S0022510X12001682/1-s2.0-S0022510X12001682-main.pdf?_tid=0311f0c6-7549-

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Matias, J. (2011) Co-design in a historical context. Mit center for civic media, December 23 [online]. Available at http://civic.mit.edu/blog/natematias/co-design-in-a-historical-context

Pettis B. (2012) Fixing misinformation with information. MakerBot Blog, 20 September [Online}. Available at: http://www.makerbot.com/blog/2012/09/20/fixing-misinformation-with-information/

Sanders, E (2009) Interviewed by Jane Szita for FRAME magazine, October, p 107-111.

Sanders, E. and Stappers, P (2008): Co-creation and the new landscapes of design, CoDesign: International Journal of CoCreation inDesign and the Arts, 4:1, 5-18

STAPPERS , P AND CO (2012) CREATION & CO: USER PARTICIPATION IN DESIGN. Institute for Design and Fashion and Waag Society,Netherlands [online]. Available at http://opendesignnow.org/index.php/article/creation-co-user-participation-in-design-pieter-jan-tappers-co/ [Accessed: 12 Feb 2013].

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